Wednesday, June 29, 2011

The Sweet Smell of Sweet Pea and Vanilla = Wall of Emotions

A wall of emotion... Literally. This painting was created in the Hospital Clinic to adorn the construction wall for the new wing. The outer ring of footprints are Bryce's. For those of you that don't know this painting is now hanging in our playroom "Bryce's Room" as the staff so graciously gave it to us when he passed away. Today I started cleaning the house, picking up Wade's toys and trying to get them organized, as I opened the door to the playroom I broke down. There was Bryce's painting surrounded by family photos and Bryce's Prayer Bears from the hospital. The smell of the room brought me back to the last few weeks in the hospital. Bryce was given a "Scentsy Bear" with a Sweet Pea and Vanilla sent pack. Since Wade has been in Florida I have had the bedroom doors closed (so the dogs don't go in there) and the smell of this sent pack was engulfing the room. In that moment I closed my eyes and I was back in that hospital room, the scent...Bryce!

George and I were talking last night about life. The ugly truth about Childhood Cancer, is that it is SO different from Adult Cancers.... Childhood Cancers (for the most part) have no reason, there are no environmental triggers, in most cases the "experts" have no idea what causes them, therefore they can not be screened for, they can not be pre-tested, and "genetic" history makes no difference... they just simply don't know WHAT causes them. That's scary... What's even harder to grasp is that these kids have a HUGE risk of getting secondary cancers when they are older because of the Chemo and Radiation. Try that one on for size! They spend months or years fighting for their lives, they are deemed "in remission" only to have 3-4-5 years go by and BAM back in the fight again. Our conversation was one a parent would never expect to have, talking about their deceased child that they miss very dearly and saying... neither situation is "the lucky one". I can not sit here and say my situation is any worse than anyone else in this battle. My friends whose children are "in remission" are so very blessed to have their children with them, to be able to spend time loving and hugging them, but they also have the fear of the next scans, the what ifs, the when will it all fall apart again, they are never "really" out of the fight. While we are all fighting for a CURE and we are all looking for the WHYS... the here and now is still so precarious regardless of the outcome.

6 months ago Bryce earned his angel wings. My biggest battle right now is trying to make people realize that life does not "go on". You don't "get over it". Things don't go back to "normal". George and I have been pulling closer together, we have been unintentionally distancing ourselves from people in our lives. We learned early on in Bryce's illness which friends we could rely on and which ones would be there for us. We clung to them and relied on them to keep us sane. Now that Bryce is gone we are realizing which friends are still trying to understand us and our situation and not expecting us to be "normal". I don't want people to think that every "bad" mood I am in revolves around Bryce and I certainly don't want to be using my heartbreak as a crutch...what I am saying is that when I say I am in a Bryce mood and I really don't want to talk to anyone, kinda just want to lay in bed and watch TV... I expect my friends to say I understand call me later if you want to or I will call you tomorrow... basically what I am saying is that this was my child... my son... a piece of my heart...and when I am having a Bryce Day please try and understand that. I am trying really hard to surround myself with the people that are healthy in supporting my ups and downs.... Most of you know that I am very upbeat and genuinely the sarcastic funny friend, but sometimes I need ME time, there is no telling what the trigger will be, there is no guarantee something I saw or did yesterday won't affect me today... it's hard to understand but that's me. I've been in Bryce's room hundreds of times, its the playroom now, but today, for some reason the smell of the Scentsy got me... What can I say!

It's so curious: one can resist tears and 'behave' very well in the hardest hours of grief. But then someone makes you a friendly sign behind a window, or one notices that a flower that was in bud only yesterday has suddenly blossomed, or a letter slips from a drawer... and everything collapses. ~Colette

Tuesday, June 28, 2011

Raising Awareness and Missing my baby while being Selfishly Lazy!

I don't even know where to start. This post has been started, erased, restarted, erased again. My mind is all over the place, I am in a place right now where my mind can't keep up with me, so I apologize if this is choppy or seems unfinished. I have been very tired, but unable to sleep. I have had headaches but no sickness with it. I have been motivated but can't possibly get out of bed to do anything. I need to clean the house, I need to clean the garage, I need to do the laundry, I need to go to work...and yet I have no desire to do anything. Is this depression, is this my body finally saying you don't have to be strong anymore lets take a little time to download and process. They say grief comes in stages, is this another stage? Have I finally been given downtime that I was not privy to when Bryce died? How on earth do I get people to understand that I am not blowing them off, I am not trying to be a bad friend...what I am is a broken hearted mommy that is being "selfishly lazy".

As we are coming up on 6 months without Bryce, George has come across the "National Angel Quilt". We have both said that we will do EVERYTHING possible to spread the word about Childhood Cancer and help to raise funds to find a cure, so George contacted them to have Bryce added to the Quilt. We have chosen this picture to adorn the Quilt as it tours the US. We will also be able to write on it, we have chosen some quotes and a few special comments about Bryce. The Quilt also has a book that tours with it sharing the Children's Journeys. I am so honored that Bryce will be included in this amazing opportunity to spread awareness!

National Angel Quilt:

We are also getting closer to September when I will be joining the 46 Mommas in Washington D.C. where we will stand together as one for the kids. As Momma Mindi said the other day ... "Hair grows back... Kids Don't". I can't wait to meet the most amazing Momma's I know... You don't know strength and determination until you have met a Cancer Momma (or Daddy)!

Depression, is not a sign of being weak. It is a sign that you have had to be so strong for too long
~ Unknown

Thursday, June 16, 2011

A"normal" blog from a "Not so Normal" Mom

Wow I can't believe I am actually going to write a "normal" blog. Ok well sort of normal anyway... George and I decided to take a mini vacation to San Antonio, Wade's in Florida for the summer so we figured what the heck a mini vacation would be nice. I thought for a moment that we were going to have to cancel on Sunday morning when I woke up and I felt like my eyeballs were going to shoot out of my head, but it turned out to be sinus pressure from allergies and after sleeping ALL Sunday and most of Monday it went away.

We stayed at the Omni La Mansion Del Rio, which is right on the Riverwalk. The hotel is Beautiful, laid out a little strangely but the room was awesome the details were cool, wood beams on the ceiling, a brick wall in the room and the entrance door (for our room anyway) was double french doors. Pretty neat. We found out later that this property use to be St Mary's Institute, in the late 1800's and later, 1931, St Mary's University so the layout made more sense. Needless to say we like it a lot!

Our first day we decided to walk to El yeah it's like 106 degrees here to have lunch at La Margarita (which was suggested by several people). The food and service was great but the walk damn near killed me... LOL! When we returned to the hotel we rested for a little bit and then hit the Riverwalk. We figured we would walk down to the actual mall, it's air conditioned after all. And what do we find? A store called "Primarily Purple". Yup you guessed it Purple Monkeys, several different kinds... Hello Bryce :-) we are having a great time, thanks for stopping by to check on us! George and I were both so stuffed from lunch that we decided to skip dinner and head over to Howl at the Moon. I forgot how much fun Piano bars were. Now keep in mind my "piano bar" experience is at JellyRolls at Disney's Boardwalk Resort so they are limited in what they can and can not sing and/or say... Needless to say Howl at the Moon was not. We were entertained with the musicians, there were 4 (2 pianos, 1 guitar and 1 drummer, they all rotated)... they had their iPhones out and when they didn't know the words to a song they would pull them up...if they didn't know a song they would listen to it real quick on the phone. It was funny, oh how did we ever live without the Android phone.... We had a great time. I would like to thank the "Boston Cream-Tini" for an excellent evening!

Day 2 we decided to go to Schlitterbahn, New Braunfels. Um... yeah! This is the one that you see on the Travel Channel. The Number one Water Park in the US, the One that beats out Disney's Water Parks year after year, the best of the best... Um... NO! I may just be Disney spoiled but this was the most annoying park I have ever been to... Let me see if I can do this justice, it is located in the middle of a residential area so they don't have property to expand, so what they did was build a new park about 5 miles away from the original... So, you park at which ever lot has spaces and go up to buy your tickets. You get a wristband that allows you access to either (later we found out its actually 3) and then they have a bus that takes you from one to the other. Ok, weird.... so George and I ended up parking at the Original Park. We knew right away that we wanted to go to the "New" park for the slides you see on the Travel Channel, so we bought our overly priced tickets, got our wristbands and onto the bus we went. We got over to the "New" side. Upon arrival there we realized um, yeah this is 2 parks too... So we hiked it, about 2 football fields from one side to the other and proceeded to wait an hour and a half for Master Blaster (the water coaster). After that we floated around the "wave pool river" twice and then hiked it back to the other side for the Dragons Revenge. Dragon's Revenge was really cool, I liked that one a lot but for $100 i'm pretty sure I was a sucker to their Travel Channel reviews. A hike back over to the other side to get our things, a bus ride back to the Original Park and we left. It was HOT, it was annoying and it was nowhere near what we are use to in a water park. Perhaps we will try the Galveston Schlitterbahn, someday! When we got back to the Hotel we went to BBQ lunch on the River and then nap time for Amy! My nap was followed by "Date Night". George had set up a really nice dinner at The Chart House Restaurant which is at the top of the Towers of America (which is like the SpaceNeedle), its a rotating restaurant at the top of the tower. Again Martinis made the night a little sillier (I don't ever drink so...) Dinner was really good, the company was great too! George and I had a really nice time.

Today we are heading home. A nice little getaway. Time for George and I to just hang out together and have fun. We really needed this. Back to the grind, to real life tomorrow.

A vacation is having nothing to do and all day to do it in. ~Robert Orben

Thursday, June 9, 2011

It Seems Like Just Yesterday... Or was it Forever Ago!

Years, they come and go, they pass by in the blink of an eye. As we go through year after year we often say "I can't believe it's been a year". I turned 36 years old this week, I sit here and think WOW, it seems just like yesterday I was in High School, It seems like just yesterday that I started working at Disney, it seems like just yesterday... this is a statement that goes along with the happy memories, things we enjoyed, had fun with or had the opportunity to meet great people during. "It seems like just yesterday is NOT something that goes a long with the loss of a child". It seems like FOREVER ago because we are missing them deeply and are trying so hard to hold on to that one last moment, that happy time, those feelings as they slip further and further away.

One year ago this week we were at Disney World on our family vacation, Bryce's first trip to Disney. One year ago his hair was growing in for the first time in his life, he was extremely happy, he seemed to be getting healthier, it seemed like we might just beat the cancer... One year ago we were very hopeful that Bryce would be able to beat the monster.... This week we went to Disney World, one year later... a family of 3!

Wade spends the summer with George's family, he has been doing this for the last 3 years, in Orlando. It's his "summer vacation" and started out as a way for George's parents to have special quality time with Wade since they don't live by us. The first year it was just on a whim, last year it was to help us out so we could focus on Bryce's treatments, this year it is to give Wade a fun summer where he is the center of attention. He looks forward to it all year, mapping out all the things that he is going to do. How many times he will go to Disney World, play at the playground, etc. He loves this time! George and I look forward to it as well, it gives us time to focus on each other and work extra shifts. This year though we are a little somber too... It is the first time in many years that we have had an "empty home". Bitter Sweet. We are happy to have time to spend together, knowing Wade is having a Blast, but...

George and I just got back from dropping Wade off for the summer. We spent the last 2 days laying by the pool at Disney World. Of course Wade keeps us laughing, silly little things like on the airplane, the Flight attendant gave him his Sprite and instead of saying Thank You, Wade said "You are so inspirational"... I about spit my soda out! He is such a funny kid... We had a really nice time just hanging out at the pool. Wade really loved it and it was nice to relax. Now... it's back to the grind. 2 months to get the house cleaned up, painted, reorganized... Get the garage cleaned out, spend more time with George, work overtime, and try and make time to have a Great Summer "Vacation" for ourselves!

I also wanted to say THANK YOU to everyone for helping me with my Birthday Wish. I posted a challenge for everyone to donate $1.00 to my St Baldricks account for my birthday, a Way to help childhood cancer research, my goal was to try and raise $500 for my birthday. You all are amazing and I can not say thank you enough as my birthday donations came pouring in raising $660 in less than 24 hours... Simply Amazing!!!!!

A year has passed, our family has changed, our hearts hurt, but we promise to make this the best summer we possibly can! Day trips, dinners, movies, quality time. I want to look back on this summer and think "it feels like just yesterday"